Diagnosed and died in 2008 at 22 years old
Nicole Antonette Geary Phelan was diagnosed with Fibrolamellar Hepatocellular Carcinoma (FHC) on June 5, 2008. She had been having some pain for a minimum of 6 months and had lost approximately 30 lbs. which put her at about 125lbs. Nikki didn’t have insurance so was putting off going to the doctors. Finally on May 23, 2008 she went to the emergency room where they said she had pneumonia and sent her home with antibiotic. The following week, May 30, 2008, Nikki returned to the emergency room in much more pain so they did a CT Scan. The scan showed what they thought was two masses on her liver. Nikki was admitted to the hospital, which is in a very small rural town and a country hospital. On June 2, 2008, she was transferred to the University of Maryland Medical Center, Baltimore, Maryland, US. The testing began and the MRI showed a tumor that was 14 x 10 x 8 cm on her liver. Additionally, the lymph nodes surrounding her liver were enlarged. On June 5, 2008, it was confirmed that Nikki had FHC in the liver tumor and they would be doing an additional biopsy on the lymph nodes to confirm that the cancer was the same. This was confirmed on June 9, 2008, the same day she was released from the hospital. While in the hospital, Nikki was very nauseated and was unable to keep much food down and continued to lose weight. By the time she was released, I believe she weighed 112lbs.
Nikki was home for one week and she gradually got worse, she was very nauseous and unable to keep much, if any, food down. The liver surgeon contacted us on June 11, 2008 to say that he and the oncologist were discussing how to best treat Nikki. They were considering using chemo first to shrink the size of the tumor in an attempt to make the surgery easier. I asked the surgeon if he really thought that Nikki could withstand chemo since she continued to be nauseated and can’t really keep much food down. He stated he didn’t realize that was the case and he said he would further discuss with the oncologist and get back to us on Friday, June 13, 2008. The surgeon called on Friday and stated that he would be performing the surgery to remove the liver mass and some of the lymph nodes early the next week. He would call on Monday to let Nikki know when to report to the hospital.
Meanwhile, Nikki and I were doing wedding planning as she was getting married on August 16, 2008. Additionally, Nikki’s only sibling, brother Cody, is in the military and was serving in Iraq at the time. So I had to contact the military through the Red Cross to get her brother home for the surgery because we were told that the prognosis is poor.
Monday, June 16, 2008, the surgical team contacted Nikki to tell her to come and be admitted to the hospital and the surgery would be performed the next day, June 17, 2008. Nikki’s brother made it home the morning of June 16, 2008 and they had portraits taken of them together with Nikki in her wedding gown because Cody would not be able to make it back to the US for the wedding. Nikki has a very large family and the morning of June 17, 2008 arrives and she is prepared for surgery with more than 15 people there to support her, Mom, Dad, Step-dad, fiancé, grandparents, aunts, uncles, brother and very close friends. Some of these family members had to travel more than 700 miles to get to Maryland, but they did, just to support Nikki and me. Nikki’s surgery lasted for 7 hours. They successfully removed the tumor and 30% of her liver. They removed some of the lymph nodes but were unable to remove them all because there were some that were matted to the blood vessel that goes directly to the aorta and it was too risky.
So……the outcome, Nikki still had FHC and additionally, the lymph nodes in her chest appeared to be enlarged. Nikki was released from the hospital on June 30, 2008 but had to return on several occasions for pain, nausea, unable to eat, etc…..She returned to the hospital on July 17th for the last time. She continued to decline and lose weight yet was retaining fluid in her abdomen and legs.
Nikki was determined to get married, even if she had to “break” out of the hospital, so on August 16th, the afternoon of her wedding day, I picked her up from the hospital and off we went to the wedding venue. If you had seen her the day before, you would have thought there is no way this girl is getting married tomorrow, but……Nikki was very strong willed with her Irish blood. She not only got married but she also stayed for the reception until I had to force her to leave at 9 pm. Nikki and her husband got into the limo and headed back to the hospital for her to be readmitted.
Two weeks later we requested a meeting with all of her doctors to discuss her prognosis because it was clear that she was not improving but only getting worse. The hospital wasn’t doing much for her other than managing her pain. At this point her primary surgeon estimated she had 6 months to 1 year to live. We met with the oncologist, and he said that her nutrition would have to improve greatly in order for any form of chemo to be considered. Well, since she couldn’t keep any food in, and even the feeding tube nutrition would make her sick, any nutritional improvement was unlikely.
Two weeks later, on September 4, 2008, the surgeon contacted me and said that he had previously been way optimistic and was now giving Nikki only two weeks to live. The University of Maryland was 1 ½ hours from where we live so we had been working to get her moved from the University to a nursing home closer to home. In fact, she was moved the very next day, September 5, 2008. The next two weeks Nikki had many visitors from local, very close friends, to family from Massachusetts, Connecticut and Vermont.
Sadly, Nikki passed away at 6:32 a.m. on September 18, 2008, exactly two weeks from when the doctor gave us the final prognosis. She was not alone, her Dad was with her and she continues to be a part of many things that we do in life.
We will continue our attempts to bring awareness to this cancer every chance we get. My daughter will not have died in vain and my biggest wish is to spare other parents the agony of losing a child to this cancer.